by Cristela Guerra, The (Fort Myers, Fla.) News-Press

by Cristela Guerra, The (Fort Myers, Fla.) News-Press

CAPE CORAL, Fla. -- In Cape Coral, Fla., under one worn roof lives a family some call superheroes. Their house is like any other colorful concrete box, on a cracked road dotted with mailboxes, no sidewalks and patches of green lawns. They have a tiny toy poodle, a graying black Labrador mix and a big backyard. In the still dark hours, a seizure begins almost every day.

Around 2 a.m. on a Thursday, two furry black paws pounce on Brandi Lawrey's face. Her blue-gray eyes snap open. Gavin, her 5-year-old, mumbles incoherently. Hershey the poodle does the job he was trained to do. He first alerts the boy, licking and kissing his face. The dog can smell the change in body chemistry. Gavin begins to panic. "Seizure, seizure," his little voice utters.

His mother's long hands reach out to grasp his 3-foot, 5-inch frame. Brandi pulls his body onto her chest. She feels his labored breaths in the darkness. Her 8-year-old daughter, Makenzie, sleeps in a bedroom down the hall, sheltered from the nightly chaos.

Dad Jeff Lawrey wakes when the shaking begins. He quickly throws his arms over Gavin's body to brace him.

For less than a minute, they grip their son as he convulses. His eyes are rolled back in his head.

The lights go on.

Hershey is handed a treat. Gavin's iPad is placed against a headboard. Lullabies play to help him go back to sleep. Halfway across his father's chest, the boy lies askew in the middle of the king-sized bed. His ambulance and firetruck pajamas read "Mommy's Hero."

Mother and son breathe in sync. Precious moments of peace pass.

Their story is one of survival, traversing a fine line between sadness and joy.

"We have tragic moments," Brandi says. "But it's not a tragic story."

--

For a year and a half, Brandi and Jeff watched their healthy son grow and meet every developmental milestone.

At 18 months, Brandi looked up from her seat on the couch to find Gavin staring blankly at a wall.

"Gavin," Brandi called out anxiously.

No response.

"Gavin!" she yelled.

His upper body locked in spasms, she watched him melt to the ground.

The storybook existence the Lawreys lived before moving to Southwest Florida from Michigan in 2005 shifted abruptly. The characters changed.

Life became a stream of doctors' offices and visits. Tremors started in Gavin's hand like an electrical charge that moved into his body. He began to regress. He couldn't feed himself. He couldn't play or do puzzles or stack blocks. When he started writing, he would press so hard to control the shaking that pencils and crayons would break.

A movement disorder, diagnosed in June 2010, was found to be the cause of his episodes. The seizures were confirmed three months later during a four-day video EEG at All Children's Hospital in St. Petersburg. It measured the electrical activity in his brain. Gavin had 11 seizures in one night. But these were all symptoms.

Their greatest enemy remained a faceless villain.

Diseases were checked off the list. At least it wasn't cancer. At least it wasn't muscular dystrophy. At least it wasn't some other disease.

Brandi traveled with Gavin to find answers from doctors around the United States: Baltimore, Atlanta, Miami. Jeff continued life at home, working first as an engineering tech and later as a senior engineering designer, driving Makenzie to school, helping her with homework and trying to maintain a sense of normalcy when Brandi and Gavin were out of town. The family's savings dwindled to almost nothing; money spent on sleep studies, blood work, brain scans and genetic examinations revealed secrets little by little. They started fundraising to put money in a medical trust fund.

Brandi and Jeff were eventually faced with an obvious choice in late 2011: paying the mortgage or paying for Gavin's medication.

A notice of foreclosure arrived in October.

"Jeff's working his tail off, making a decent living," Brandi says. "We're still losing our home."

In January 2012, Gavin was diagnosed with a mitochondrial illness that affects his neurological system.

Jeff, 33, is up at 4:30 a.m., just after Brandi finally gets Gavin and herself back to sleep. Dad's the gym rat - some days by choice, other days by necessity.

He sets out his work clothes and gym gear the night before, near two protein shakes. In the mornings, Jeff sacrifices sleep to get to the gym for an hour. It is one of the few things that he can control.

---

There are two Gavins. Some days he's listless and mean. Following an episode, he'll be dazed, forgetful. Sometimes he tells his mother he doesn't love her or tries to hit.

The seizures attack at random - some nights it's two, others five or six.

He has one more that Thursday morning before it's time to get ready for kindergarten by 6 a.m.

She whispers, urging her son to calm down, to behave, to make good choices.

Once he rests, a twinkle lights up his eyes and Gavin doesn't remember a thing. He turns back into his mother's snuggle bug and tells her "I luh you" every couple of minutes. He has a hard time pronouncing v and f sounds.

Few know the kind of night she had as Brandi parks outside Caloosa Elementary School. But being president of the parent-teacher organization, everyone knows her face. Some tell her she looks tired, that she needs to take better care of herself.

Some call Brandi "Wonder Woman," to which she usually replies that her cape must have holes in it because it doesn't seem to be working.

In the morning sun, Brandi lugs a mini fridge past the principal's office and down the hallway to Angela Harbison's colorful kindergarten classroom. The light, relaxing sounds of a piano from the CD player greet them as they wander in.

She sits, cuts shapes, takes notes and watches her son try to learn. As their service dog's handler, Brandi is required to spend every morning at the school with her son.

It's become a safe haven for her, a nexus of support.

Gavin is failing kindergarten. Some days he knows every answer, the next day he forgets. He's hospital homebound, which means his schooldays go until noon and he is tutored twice a week at his house.

----

Brandi, 31, spends every moment of her life with Gavin. She scours the Internet to research what doctors tell her in order to understand the medical terminology. At appointments, she asks tough questions. She's become Gavin's advocate, arguing with doctors for something as simple as an IV to keep her son from dehydration. When Gavin is having a good day, some doctors question whether he is sick at all. Brandi has taken videos on her phone to show them his episodes.

The anxiety has become a burning sensation, an elephant squatting on her chest. Someone is squeezing her heart and forcing her pulse to race. When she does sleep, she wakes up sweating. She is hounded by the nightmares of what could happen to her son, to her family.

Despite all this, she exudes confidence. She is a former massage therapist and certified nursing assistant. Anyone who doesn't know her sees a woman with blonde, wavy hair, long eyelashes and a long, determined stride. Her high-pitched, easy laugh is recognizable above the din of a busy classroom.

She seems strong, even on her worst days when throughout the school an intercom buzzes loudly: "Brandi Lawrey to Mrs. Harbison's room. Brandi Lawrey to Mrs. Harbison's room."

No matter where she is, what she's doing or how she feels that day, she runs to her son's rescue.

Other days he saves her. Gavin is the family's little warrior. The one with real superpowers. He is their Gorilla Glue, their giggle box. He is their strength.